Yesterday was one of the worst yet. After two visits and two phone calls to nurses Mike was admitted to Willen. He was the worst he has been, he had to be taken by ambulance as he was totally unable to walk and was very weak. When we arrived at Willen he was being examined by the dr and had a seizure followed by projectile vomitting, they gave him diazepam but shortly after he had another seizure. He was very non responsive and confused. The dr took me into his office and told me that he felt that there was nothing medically that they could do for Mike at this stage and transferred him to Milton Keynes General Hospital. He had another seizure there - I was not suprised by the amount of seizures that he had yesterday, I don't know how many people I told that he had been unable to keep even water in his stomach and that his medication was not remaining in his stomach long enough to have any affect - but what do I know??

Jean and Eddie are staying with us and Gill and Karen have been around all weekend. Everyone in the shop have been fantastic and Sadie was a star and did two paper rounds for me this morning. Thank you to everyone who is giving us so much support x x

Mike had a headache he couldn't shift all day yesterday and we have had a terrible night. He woke me at 1.30 am unable to speak but I very quickly (but too late) established that he was going to be sick. He has now been sick several times and can not even keep water down to enable him to take any pain killers for his head. I have spoken to Willen and the dr and am now waiting for the dr to arrive.

I have so many people off today, I don't really know how the papers are going to get delivered but Mike is my number one priority right now.

Mike slept most of the day yesterday. We are both still on the emotional roller coaster and are finding it really difficult at the moment. We have had some of the most serious conversations we have ever had this week and the whole thing has never felt so real.

Regardless of all the rubbish going on right now, life goes on! Today we are having a Macmillan Coffee morning in the shop. Thankfully I have Ingrid and Marie and Jean and Eddie are coming to help too. So if you are local pop in for coffee!

I would just like to say thanks to Marie and Neil, and Gill who drove 80 miles last night to come and support me when things got really tough. I really appreciate it. x x

There's not a lot of news today. Mike slept most of the day yesterday (unlike me), he was awake for the evening and other than one small focal seizure and a few problems with his speech was on quite good form.

I am very down in the dumps at the moment - Mike's illness is all of a sudden very real and even though I commented on how wonderful the kids were yesterday Hannah managed to ruin that. I can not understand her behaviour and I am now at a point where I will not have it said anymore that it is totally because of Mike's illness, I cannot understand how she has no consideration for Mike, Cam or me while we are all suffering and should be supporting each other at this time.

A bit of suprising news today - Mike is home. I can't believe that he has improved so much in such a short space of time, just as I couldn't believe how quickly he deteriorated.

The last few days have been a real rollercoaster ride for us all. It got the better of us last night and we sat and both had a good cry. We talked about how he was so ill on Sunday that we thought that he would never come back from that, but although his memory has deteriorated further and the use of his right hand is not good, he is still very much alive and kicking.

Thanks to everyone who has helped us and sent good wishes over the last few days, and thanks to Hannah and Cameron who obviously have found the last few days horrendous but have done their very best to make things easier for me. A special thanks to Hannah for getting up at 3.30 am to do the papers and for breakfast in bed, and to Cam for his very special hugs. Love you both x x

Latest News

With Mike in Willen my daily routine has changed so I have decided to update the blog this evening instead of the normal middle of the night.

Mike didn't have a particularly good night as he was sick and had two small seizures but he has been much more settled today and his speech is better than it has been. When I arrived this morning he was quite distressed saying that nobody wanted to do anything to help him and nobody cared like I do (I suppose it's comforting to know that he does appreciate me after all) - I later discovered that he hadn't actually called anyone when he was sick and it took a dr and me quite a while to make him understand that nobody can help him if they don't know what is going on.

He seems to have his appetite back and I think I am finally beginning to make him understand that they are actually trying to help him and not make things difficult for him. I think we have both had a big wake up call over the last few days and we are gradually coming to terms with what is happening now.

After an awful few days Mike was admitted to Willen Hospice yesterday morning, in the hope that they can control some of his symptoms. We were both initially reluctant for him to go in, but we know that it really is the most sensible place for him to be.

It really upsets me that he is struggling so much to speak and make himself understood. 99% of the time I am very good at mind reading, but if I don't get it right first time he gets really frustrated.

We have both shed a lot of tears in the last few days, in such a short space of time things have changed a lot, but as always my confidence lies in Willen.

Yesterday was quite an eventful day. It has been decided that Mike's stomach is possibly not tolerating some of his drugs and so a syringe driver has been put in to bypass it. We had nurses in and out all day yesterday, setting it up and checking it, the last ones not coming until 10 o'clock last night which makes me very thankful that Eddie got up for me yesterday morning because if I had been up at 3.30 I don't think I would have lasted the day.

We had a reasonable night although we were both very conscious that we had a syringe driver in bed with us. Mike kept forgetting that it was attached to him and then getting in a state thinking it had come out and I was worried that I would turn over and pull it out.

When we were away I bought a plaque for the kitchen that says "Just when I was getting used to yesterday along comes today" - I think it is so appropriate, we just seem to deal with one thing and something else happens to test us a bit further.

I added some pictures to the blog yesterday to keep me awake waiting for nurses.

The view from where we stayed

Hannah & Cam crabbing on a not so pleasant day

Cam!!

Cam on Swanage Pier

Where we stayed (the cream building in the middle of the picture)

Hannah and Nicky

We're back, but not with much good news unfortunately. Mike has had quite a few syptoms over the last few days and as a result we came home yesterday instead of today.

Mike is really struggling with his speech and memory and has a numbness around the right side of his mouth and has lost his grip with his right hand. As usual Willen have been fantastic, Liz has spoken to the dr, been out and visited, organised for the district nurse to come to do bloods and for Hospice at Home to come to set up a syringe driver - she really is a star and I don't know what I would do without having her at the end of a phone.

Our break away was good and we had some real quality time together, the problem is that when things are stable for so long you are almost given a false sense of security, the last few days have really made me think what is really happening. I also struggled a bit at times in Swanage as we spent so many holidays there with my mum and it brought a lot of thoughts about how I miss her to the surface.

I need to thank everyone that kept the business (and home) running last week while we were away - Judy, David, Ingrid, Marie, Mel, Rhiann and of course Jean and Eddie, who have been brilliant. Thanks to you all x x x x

It's the last blog for a week, we are going on holiday today. I have just looked at the online weather forecast and wished I hadn't bothered - all week there has only been a little rain forecast for Tuesday, today it has changed to Monday, Wednesday, Thursday and Friday. I don't know why I am suprised because Wednesday is our wedding anniversary, we got married in horrendous rain and apart from last year it has rained on that day every year for the past twenty years.

Mike was quite good yesterday, he only had one very small seizure which he coped with without medication. He was a bit chatty for my liking in the night though, waking me up to tell me when Hannah came home and then waking me again at 2.45 to ask me what the time was, at which point it was not worth me attempting to go back to sleep so we just chatted for a while then I got up - he is now sleeping like a baby!

I will be back blogging far too soon, Mike did say the other day "shall we just run away?" if only we could and everything be different and back to normal.

Yesterday was a busy day. I eventually had a chance to go to bed for a couple of hours at about 11.30 am, so as if by magic Mike woke up and decided that he wanted to be "Mr Sociable" . I told him that I needed to sleep because we had visitors coming in the evening for Cam's birthday that wouldn't be arriving until about an hour before my normal bed time and it would be my last opportunity to get a sleep before we go away. I eventually got to sleep to be woken up by Mike telling me that he had decided to come to bed too. My intention was to sleep as long as I needed yesterday but about an hour later I was woken up again to be asked "what time do you intend to get up? I was worried you'd slept longer than you wanted to" - I just got up and said nothing. However much his messing with my sleep pattern does my head in, it is not Mike it is his illness, he has no real understanding of time any more and has totally forgotten how tiring it can be getting up at 3.30 am. - never mind only one more morning of getting up at 3.30 am and then I can have a week of staying in bed (If Mike allows it!)

Mike had quite a restless day, he doesn't seem to settle very well when he knows people are coming (he is the same on a Thursday when his mum and dad are coming in the afternoon). He went to bed late in the afternoon and asked to be woken up in plenty of time so he didn't have to rush to get up when our visitors arrived. I called him three times before he got up and the last time he got up far too quickly and promptly had a seizure. It was the biggest seizure he has had for ages, he totally lost his speech and his eye drooped for a long time afterwards. I put him back to bed for a while but within about half an hour he had recovered enough to get up and see every one, although his speech was quite slurred all evening.

We had a late night, Nicky and I got less than five hours sleep so I really need to plan a bit of sleep time in today.

Nicky is going home tonight and we will all miss her loads. She has been a real star, getting up every morning and she has even got to know all our regular customers now. I hope she'll come back soon. Love you loads x x

Thankfully Mike behaved himself at Willen yesterday and was with people that he has been at day hospice with for some time. He was a bit upset when I picked him up, another one of his group died at the weekend - it makes it all very real!

Mike had a good evening and stayed awake, instead of having his normal long sleep after day hospice, (it may have something to do with the fact that I told him I was cleaning our room ready for his mum and dad coming to stay and that he wasn't allowed to go to bed) - he did as he was told for once, which was good because it meant he was tired and went to bed at night and slept without any hassle.

Happy birthday Cameron, I don't really know where the last seventeen years have gone - that angelic looking little blonde boy has turned into a dark 6'2" giant with size 13 feet and an attitude that is just as large. It makes me feel really old that my youngest is now old enough to learn to drive. "It's my birthday" is not a valid excuse to be lazy and get out of your jobs today (you're not predictable at all!)

Hannah and Nicky need a special mention today, they were like something off of How Clean Is Your House yesterday, they have done loads of housework and tidying - you're both stars x x x x

We have got Mark, Did, Adam and my dad coming this evening for Cam's birthday so at some stage today I intend to get some sleep as tonight will be a late night and I have stacks to do tomorrow.

Mike had quite a good day yesterday, he was up for quite a while in the afternoon and was awake all evening. He didn't come to bed until quite late and then wanted a conversation about what we were going to have to eat when everyone comes on Thursday for Cam's birthday - sometimes it really frustrates me, because before he was ill he wouldn't have even thought about it, and just taken it for granted that I would produce something, but now sometimes with some of the questions and the tone in which he asks them I almost feel that he is patronising me, although in reality I know that he isn't.

Mike is going to day hospice today, but did quite a bit of moaning about that yesterday. It is being held in a different room and so the group has been split. He was going on about if he doesn't like it he is not going back and that it is ridiculous that he can't go with who he wants to go with. I had to remind him that it is them doing him a favour, not him doing Willen a favour by going. I do worry a little if he decides that he is not going to go that my five hours of knowing he is being looked after and my opportunity to sleep undisturbed will be taken away.

Today is official housework day, while Mike is out of the bedroom I need to blitz it in preperation for Jean and Eddie coming to stay at the weekend. Hannah has promised to help me, and considering that her behaviour, and understanding of the situation has been so much better recently we should get it done quite quickly. x

Mike had an ok day yesterday - no fits!

The evening was a bit of a nightmare, he asked Cam to take some rubbish out and World War 3 broke out. We all know that a symtom of Mike's illness is that he can't reason anymore, Cam said that he would do the bins in a minute, but Mike went mad, got up and struggled to do it himself. When he came back upastairs he got really upset and stomped off to bed. As a result of this I then had him awake most of the night asking me if I wanted soup etc.

Nicky and me picked Hannah up from work and went to Asda to do the shopping, we bought lots of bits for Cameron's birthday tea on Thursday, but he was so mouthy to me when I got back I wish I hadn't bothered. I just feel I can't keep them all happy all of the time, sometimes I struggle to keep any of them happy at all.

Sorry, late blogging again today - I have got two shop staff on holiday at the same time and it is a bit of nightmare! I've also had two paper boys off so everything has been a rush this morning. I woke up with a migraine which didn't help matters, I wasn't as quick or enthusiastic as usual, I have taken lots of painkillers and feel much better now. Thankfully Marie is in now and working full days this week to cover.

Mike had a good day yesterday, no seizures, although Nicky and me were making him laugh last night and he told us to stop because if he laughed too much he would have a seizure. (I didn't realise he could plan them)

It's Cam's first day in sixth form today, he is going to have a bit of an eventful week, with his birthday on Thursday and his first driving lesson on Friday.

I've got loads to do this week, i've written lists but doubt that i'll be able to achieve half the things on them.

Sorry i'm blogging a bit late today, we have had an horrendous morning with papers. They arrived late, then the Mails that are normally poly bagged came in four sections and needed to be put together, we then had a round to cover and another lad didn't turn up so we had to go out and do that too.

Mike had quite a good day yesterday (dare I say, no seizures!!) We went to Marie and Neils for a barbeque in the evening and Mike was on good form. I had to remind him that we needed to go home because I needed to get up in the morning, not him telling me he needed to go home because he was tired.

The girls have been really good again this morning, Cam got up but went through to the shop and fell asleep on the floor, which wasn't a great deal of use, not only because it wasn't very helpful but he decided to sleep where we wanted to put paper rounds. Hannah showed him a bit of sibling love and kicked him and told him he was lazy (with a few choice words added and sent him back to bed).

Yesterday wasn't a very good day. Mike was a bit unsettled and his memory was very poor, he got up and went back to bed a few times during the day. He had two quite bad focal seizures one after the other in the evening, I think the second one caught us both by suprise a bit.

I hope he is well enough to go away next week and that the break and change of scenery will do him good. The problem with the return of the seizures is that it knocks not only his but my confidence too.

Thankfully Hannah and Nicky are up this morning, however Cameron has not surfaced again. I am really cross with him because the papers are so heavy at the weekend and he promised us all that he would get up and do the lifting - looks like today is going to be down to a bit of Girl Power!!
Thanks girls for getting up x x

We had a better day yesterday. There were no focal seizures and Mike made an effort to be awake more in the day. He got up at lunch time and intended to be awake all afternoon but fell asleep in the chair. He did come to bed at a more reasonable time last night although when my alarm went off this morning he was wide awake and it was like he couldn't wait to have someone to talk to.

He seems to be really looking forward to going away, which is a bit of a relief because I have been thinking that with the return of these symptoms he may have lost the confidence to go, but his first words to me this morning were "only one more week and you won't have to get up for papers, you can stay with me" - I like that thought too!!

Focal seizures seem to be back as an everyday occurence at the moment, we have altered the times that he takes some of his medication in the hope that it may help (I feel that even if medically it doesn't, it may help because Mike gets very anxious about whether he has had his medication and when it is due so he may be more relaxed thinking that taking some at a different time will give him anti convulsants more regularly)

I am really struggling at the moment, we had a heated discussion last night about the fact that I need Cameron to get into a better routine of going to bed at night so he is able to get up for school when he goes back next week. Historically Cam stays up with Mike because he doesn't want to leave him on his own and Mike stays up with Cam because he doesn't want him to be on his own - why can't they just go to bed and no one will be on their own!!

Mike got cross with me saying "have you any idea what it is like lying awake thinking about cancer at night?" I don't know what it is like having cancer but I certainly know what it is like lying awake at night because the person I love the most in the whole world has it, but he can't appreciate that - everything is about him now.

He was unsettled yesterday because it would normally have been his day hospice day but because they are building an extension he can only go every two weeks now, he was also asking when his mum and dad were coming and I had to remind him that they had been the day before. We have got used to them coming on a Thursday so I think he thought they would be here today.

Mike slept all morning but got up at lunch time for his mum and dad coming. He was steadier on his legs but his speech was still not as good as it has been. He had a good afternoon but had another small focal seizure. Nicky cooked dinner for us all and Jean brought the pudding with her so it was lovely.

Paper boys and girls go back to school today so I almost have a full set again (one is still away) and they should hopefully start getting some sense of urgency back in their lives because the school hours are changing to start earlier so they won't have so much time to mess about here.

We had a power cut in the night last night, Cameron and Mike were still up so when the power came back on Mike woke me up and asked me to reset the clock, I actually thought I was dreaming but do remember telling him that I use the alarm on my phone so it didn't matter. This morning when I came down to the shop the clocks were flashing and the computer and tills need re-booting so it wasn't a dream it did happen.

My head is beginning to be filled with "I must remember thoughts" for the next ten days before we go away so I am going to start writing some lists today. Mike makes me laugh when he says "don't worry we'll travel light" when it is his wheelchair, stick, medication, oxygen etc that take up all the room. I need to remember though that although there is only the two of us going and we'll have loads of room in the car the kids are coming down on the train on the Wednesday as a suprise for Mike and I need the room to bring them and their luggage home.

Mike had a very unsettled day yesterday. He woke up at lunch time thinking that his mum and dad were coming and not knowing what day it is. I told him that it was only Monday and that they were coming tomorrow so he didn't need to rush about and could go back to bed if he wanted. (I don't know why he gets himself in such a state when people are coming, (I have told him a million times that the people that visit know he is ill and are not expecting him to be what he calls "normal" just for their benefit).

While I was at carers Mike had a focal seizure, Cameron dealt with it but was a bit concerned when I got back that it had caused a loss of speech, his speech did return quite quickly, but he was very unsteady on his feet all the evening.

When I came back from carers Nicky had done lots of tidying up and bought me some bright flowers and put them in a vase in my office to brighten it up even more - she is being such an angel I don't know what i'll do without her. Talking of angels Hannah has been back to her old self that we all know and love over the last few days which makes life for everyone much easier. Thanks girls x

Cam is the only helper that has surfaced this morning so far, he has been upstairs a couple of times but there isn't much sign of the two girls that I have just commented on for being so good in the previous paragraph surfacing at the moment.

Mike had a good day yesterday and has already been awake this morning asking what is going on this week. He tends to get a bit anxious when he doesn't know what is happening and if something is happening that he feels he needs to make himself be awake for. I have reassured him that nothing is happening today so he has gone back to sleep.

I slept yesterday afternoon, though not for as long as I would have liked. Mike decided that he would lie in bed listening to his Ipod (which thankfully he has now found the charger for) as loud as possible - it woke me up and when I looked at him he innocently said "what's up is my music a bit loud" - sometimes I don't know how I manage to bite my tongue as much as I do.

I had a paper girl leave yesterday so Nicky and I have an extra round to cover today while Hannah does the shop. Cameron won't be joining us this morning, he was at a party last night and is a little worse for wear this morning.

Mike had a better day yesterday, he was much more settled and less demanding and aggressive (I don't like that word but it is the only word that describes how he has been). He slept quite a lot but got up for dinner and was on quite good form all evening.

He was unsettled when I went to bed, but that seems to be what happens now, he seems to remember everything he needs to say and do once I am not there. Last night he came in and started rummaging through drawers to look for the Ipod charger because it was the most important thing that needed to be done at that time. He was up and down a few times in the night and twice woke me up to tell me he was back - if I wasn't so tired at times it could almost be amusing.

Mike had a sleepy day yesterday, he is a bit down at the moment and sleeping is his coping mechanism. He is very stressed about the kids, who 99% of the time are attempting to be normal teenagers and cope with the situation but Mike's personality has changed so drastically lately, he is very self centred and thinks that everything should be about him. The kids are being difficult at the moment, there is a lot of conflict between them and Mike just wants everything to be perfect, he keeps getting really tearful and saying that he can't believe that they can hurt us so much.

Sometimes I just feel that I am stuck in the middle all the time. I am slightly concerned that when we go away in two weeks time I have organised for the kids to join us midweek as a suprise for Mike and at the moment all Mike wants to do is be a million miles away from the upset that they are causing him. I am sure (or hoping) that he will miss the kids by the middle of the week and be pleased to see them.

Nicky and Cam are up to help with the papers but Hannah hasn't surfaced yet. It's the first weekend day that we have done it on our own but I am sure we will be fine.